Me by the garden in the meadow grasses (watching Eric sift dirt)

Three weeks between updates seems a little much.  However, there is not much new to say–things are going along pretty well, with no spice-rack installation under the bathroom sink as yet.  I am in the second week of round 7 of chemo.  The afternoon of chemo and the day after, I am tired and feel quite run-down, and I have some gut cramping and indigestion on and off during the 3-week cycle, but it is overall quite tolerable on the lowered dose.  I have more hair than before but I can’t tell whether it is just longer, or a greater number of hairs.  Maybe 10% of my hairs could survive the starting dose of eribulin, and a 15% can survive the reduced dose?  Who knows.  Eric says the spots that were bald after brain radiation are coming in darker (my original color) though the rest is much more gray than before.

In any case, it’s gotten mostly too hot to wear anything on my head, so I mostly don’t.  When we go out in public, I call it “making the world safe for chemotherapy victims.”

I started getting IV vitamin C every week or so a couple weeks ago.  I’m also having acupuncture every week.  Honestly I am not seeing dramatic results from either one, but will stick with them for a while.

The summer semester started last week and so I am turning my attention to working on my independent-study project (actually doing the data analysis I planned and researched in my previous two Critical Inquiry classes on research).  There are nine new lambs on the land and they are often viewable right out my bedroom window (or back door) because they are pastured just west of our house.  Everything is spring green.  (except the lambs)

My bottles of partially-used prescriptions are getting out of hand.  I think I need one of those spice-bottle spinny caddies to control them.

Or maybe something like this for the back of the bathroom cabinet door…

I had a nice week “off” of chemo.  I didn’t do much in the world of the sick–just made a few appointments and went for one blood draw, and didn’t end up doing any cancer research.  I have felt pretty good this whole cycle (the first with the reduced dose of chemo); no queasiness after the first evening, good appetite, more energy than the last few months.  I finished a big written project for my Philadelphia University class, putting in a lot more time on it in the couple days before it was due than I thought I would, but it was kind of fun.  Geeky fun.  I have been managing two walks a day, plus various supplements, drinking green tea and more water, etc. (I made myself a daily chart to help keep track).  I did a little teaching about labor and birth for a small group of teenagers last week, which was really fun, though I felt out of practice.

This afternoon I start my 6th cycle of chemo.  Meanwhile many people at QIVC (my intentional community) have a stomach bug, including my 15-year-old.  It seems like a 24-hour one, though.  Cross your fingers.  My WBC counts are still in the normal range so I am not any more worried than I would usually be when QIVCers are dropping like flies…

Thursday morning I get a port “installed” (can’t find a better word) below my clavicle.  This will allow chemo to be delivered without putting an IV in my arm (that’s getting harder as my arm veins get scarred up by the chemo).   I am seriously hoping it will not be as annoying and irritating as my 2006 port, which stuck out way more than some do, and physically bothered me all the time.  (The woman from Interventional Radiology*, the dept. at Albany Med that is putting in the port, assured me that since 2006 ports have gotten smaller, and at AMC they actually use pediatric-sized ports for many adults anyway.)

Next week I start another try at weekly acupuncture, with the integrative practice, where the acupuncturists are experienced with cancer/chemo.  (Last time, 2006, it was with a general Chinese Traditional Medicine practitioner and I didn’t think it did much for me.)  Though I had so few side effects this last cycle that maybe it’s not necessary–as I understand it, acupuncture is for side effects.  And I’m working my way towards starting IV Vitamin C as well, which is supposed to do two things–decrease side effects (thus theoretically enabling higher doses of medication) and potentiate the chemotherapy.

*a medical sub-specialty of radiology which utilizes minimally-invasive image-guided procedures to diagnose and treat diseases (thanks, Wikipedia)

But what is really important?  Hair.

I have ended up with a smattering of hairs still hangin’ in on my head, and growing.  This sounds good but actually looked really awful and depressing.  So last week Eric buzzed my head.  Now that the weather is getting warmer, it is more comfortable to go hat/scarf/wrap-less a bit.  We decided to create a new hair look: chemo punk.  Here is a picture.  (Which I have now spent 8 minutes trying to center..forget it)

I think the few hairs left may eventually go, or I may get tired of the silly look before that, but for now it’s the fun I can find to have with it.

Really not sure what to do about the thinning eyebrows, though.  No makeup skills.

It has always seemed expensive, but this really puts it in perspective.

(a button seen today at the oncologist’s office–round 5, dose 2 of chemo)

This week I started my fifth round of eribulin.  I am very tired of wearing head coverings all day.  My radiation “crop circles” have not grown back.  Maybe they won’t.  Or maybe it will take six months.  The oracle of the Internet (accounts of other metastatic breast cancer people) is not clear on the subject.

Some: late last week (my week “off” chemo) I started feeling some numbness in my right hand.  Then my left hand.  Then early this week my right foot, and my shins, and my left foot.  It is all superficial–only light touch feels funny.  The nerves below the epidermis are working, but the most superficial nerves are damaged.  This is a common (50%?) side effect of my and many other chemotherapies: peripheral neuropathy, which can be numbness, tingling, pain, or cold- or heat-sensitivity, or a combination.  A little superficial numbness is not too bad.  It is not affecting what I can do, or my balance, or anything.  It just feels Really Weird.

Less: Because of the neuropathy, we reduced the dose of my chemo as of this week.  There is a standard dose reduction that is apparently needed for many people who take this drug for a while.  It still works with the reduced dose.  Of course I asked about the big EMBRACE trial that showed how good this drug is: if 30% or more of the people who took the drug in the trial ended up on a reduced dose, did they look at those patients’ outcomes in comparison to the full-dose patients’ outcomes?  You’d think they would have.  But I think in real life the course of care and doses of chemo given to patients in the trial were not clearly sub-settable.  People switched to the lower dose at different times.  People skipped doses or delayed doses due to low white or red blood cell counts (which hasn’t been at all a problem for me).  I bet sometime in the future, though, as eribulin becomes used earlier in the metastatic disease process (most people don’t get to try it first like me), there will be a trial of the reduced dose vs. the full dose to see if the reduced dose is just as good.  Until then, people who can’t handle the full dose anymore get the reduced dose, and it works as well as it works.  My oncologist’s take on it seems to be: as long as it works for some people, it’s worth trying in any one person, so who needs the data from the subgroup?  The subgroup analysis won’t tell him whether the lower dose will work for me or not.  I guess that makes sense.  But if the lower dose didn’t work for anyone, wouldn’t that be important to find out as part of the trial?

I’m also trying to eat less dairy.  Very sad.

More: To start with the simple, I am drinking at least one cup of very-well-steeped green tea every day.  Moving on abruptly to the incredibly complex, I now have more healthcare providers.  Last week I began going to the Stram Center for Integrative Medicine in Delmar (next to Albany) because I want to get IV Vitamin C (which they offer) and because I want guidance on nutrition and supplements.  I will also most likely try their acupuncture person and see if acupuncture feels more beneficial for me than it did in 2006.  My initial meeting involved a health history and the creation of a long list of blood tests that will guide their recommendations.  They’re all about inflammation, immune system function, coagulation, vitamin and mineral levels, etc.  My oncologist agreed to run a few of these and yesterday my primary-care doctor spent a totally un-American amount of his afternoon with me, working through the remainder of the tests, reviewing the logic of them per Dr. Stram and other sources, and figuring out exactly which ones to order.  Now I can just go to the lab and give them a pint of blood, right? Wrong.  More homework: I need clarification from the Stram Center about 3 or 4 tests that we couldn’t pin down yesterday.  I need to talk to my health-insurance company about what happens when they refuse to cover many of these (they are oddball): do I pay the lab’s list price or the “reasonable and customary” price that the health-insurance company would have paid? And then I need to talk to the lab and get the prices for these tests, because if some of them are hundreds of dollars, I most likely need more discussion of their utility with Dr. Stram before I do them.

Less: calling people “doctor.” He said they use first names so he is Ron.

Less: time to do paying work and schoolwork in the last week…but also, less fatigue on my last week “off” than the cycle before, and the last few days, less queasiness (none so far!) and less feeling generally under the weather and kind of poisoned.  Still not feeling great, but not in bed, and it’s only been two days since chemo.

More: At the Stram Center I also met with a nutritionist/dietician with a certification in oncology nutrition.  (He comes from the Block Center in Skokie, IL where I would be going if I lived nearer.  It is an integrative oncology clinic.)  It would be such a luxury to have one set of providers rather than trying to cobble things together…but the reason for the Stram Center is to avoid extreme cobbling.  There is my offensive team (oncologist and oncology nurses) and now my defensive team: the integrative practice.  (See the link on the right for more info about their cancer services.)  The goal of going there–what “defense” means to me right now–is to try to adjust anything in my body that can be adjusted to be less favorable to tumor growth & spread.  The lab tests, according to them, will guide them in suggesting adjustments.  And also to try to minimize side effects–they have suggestions for fatigue, queasiness, and neuropathy.  The IV Vitamin C helps with side effects too.  Looks like I have a lot of work to do before I get there, though.

It’s been a while.  Tomorrow is my second dose of round 4 of chemo.  Last week I got the good news that the chemo is working–I had a CT scan that showed the two main metastases are slightly smaller than before.  I had a brain MRI as well, which as expected showed the zapped brain lesions looking nice and inactive, and happily didn’t show anything new.  So I will continue with the eribulin.

Which unfortunately has not been as piece-of-cakey these last two cycles as it was before.  I’ve been queasy a lot, and my week “off” at the end of round 3 was a week of non-consensual napping and feeling very, very fatigued.  And that was supposed to be my good week.  (Just a reminder of the schedule here:  I have chemo two weeks in a row, then have a week with no chemo, then start over.  So my week “off” starts a week after dose #2 and lasts until I start the next cycle.)  The fatigue lifted a few days before I started the new cycle, but I have still been pretty low-energy and have spent many afternoons sitting on my bed working or reading instead of being more active.

In the middle of that week, though, I went to an overnight birth!

I’m reading The Emperor of All Maladies by Siddhartha Mukherjee, which is all about the history of cancer and cancer treatment.  It is dense and interesting.  And grim.  I just got to the discovery of BRCA1.

I am trying to eat well–specifically, avoiding lots of white flour and avoiding white sugar, and drinking green tea, and eating lots of shiitake mushrooms and broccoli!  But it is hard to eat well when you feel poorly.  Last week I had a lot of meals made up of triscuits and cheese and maybe some almonds.  (Triscuits!  whole grain!)

We are buying a much larger percentage of organic food these days.  All our dairy, almost all our vegetables, even before our CSA begins, and much of our fruit, and more organic staples from the various health food co-ops within reach of us.

And now I am going out for sushi with Eric.  Omega 3s.  Very important.

I’m reading a very thought-provoking book about what we can do with nutrition and lifestyle changes to help our bodies be less hospitable to cancer cells. It’s called Anticancer: A New Way of Life and the author is David Servan-Schreiber, MD.

Here is our anticancer lunch:

Tofu with turmeric and ginger and black pepper, shiitake mushrooms, broccoli, and brown rice.

From Information Is Not Enough: The Place of Statistics in the Doctor-Patient Relationship.